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alzheimers, Alzheimers advocacy, alzheimers prevention initiative, alzheimers prevention registry, alzheimers research, banner alzheimers institute, dementia
I recently had the pleasure of participating in a webinar presented by the Banner Alzheimer’s Institute (BAI) in Phoenix. The hour left me feeling energized and more hopeful than ever that we can beat this disease. Without question, there are some great things happening in the world of research, but we have to help.
What Is the Alzheimer’s Prevention Initiative?
BAI is a non-profit organization dedicated to groundbreaking research, and the Alzheimer’s Prevention Initiative is one of their most crucial projects.
Jessica Langbaum, Ph.D., Principal Scientist and Associate Director of the Initiative, is passionate about this endeavor, and for good reason. Almost two years ago, she lost her grandfather – formerly a successful engineer – to Alzheimer’s, and she’s committed to doing whatever she can to save other families from similar heartbreak.
The most essential component of the Initiative is the Alzheimer’s Prevention Registry, which was created to connect like-minded individuals interested in stopping this horrible disease in its tracks.
Members are kept apprised of the very latest news and information in the world of dementia research, but that’s just part of the mission. The Registry also seeks to create an unprecedented pool of potential study participants for prevention research.
How Does It Work?
It’s important to note that joining the Alzheimer’s Prevention Registry does not obligate you to participate in research. What it does do is arm you with the knowledge you need to be a more effective advocate, while providing information on the latest study opportunities in your own community. From there, the decision is entirely your own.
As you might expect, a common question is, “What might a typical study look like?”
Prevention studies take various forms. Participating can be as quick and easy as completing an online survey in the comfort of your living room or visiting a nearby research center once or twice.
Of course there are also larger randomized clinical trials. In these longer-term studies, participants are assigned to either an experimental group or a control group and are observed over time. Some of these projects involve investigational drugs while others focus on things like healthy lifestyle choices.
Why Does It Matter?
Over 5.2 million Americans are currently affected by Alzheimer’s or related dementias – a number that’s expected to triple by 2050. The economic impact is staggering. Consider this. The disease costs our country $203 billion annually and that will grow to $1.2 trillion by 2050 unless we find a way to slow or stop the progression.
If we stay on the current trajectory, by 2050, every Medicare and Medicaid dollar could be spent on dementia with nothing left over.
The Alzheimer’s Prevention Registry has set an ambitious goal of enrolling 250,000 healthy members, 100,000 of those by the end of 2013. Individuals age 18 and over of all races and ethnicities are welcome, whether or not they have a family history.
How Can I Get Involved?
According to Dr. Langbaum, as many as 85% of drug trials face delays because they are unable to attract or retain a sufficient number of participants. Quite simply, too few people are volunteering due to fear, concerns about time commitment, or just because they aren’t sure where to start.
The fact is, most Alzheimer’s studies never get off the ground because they fail to meet recruitment goals. The good news is we can all be a part of the solution by joining the Alzheimer’s Prevention Registry today, and asking our friends to do the same!
Remember, becoming a member opens the door to opportunities, but in no way obligates you to take part in any research.
Every person who joins the Registry brings us one step closer to that breakthrough discovery! Visit the website to sign up today!
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The Banner Alzheimer’s Institute is a non-profit organization; however, I was compensated for this post. I’ve been a member of the Registry since May 2013.
November marks both National Alzheimer’s Awareness Month and National Family Caregivers’ Month, and what better time to highlight some helpful online resources.
The Alzheimer’s Association offers several excellent tools including:
Did you know there are many Alzheimer’s and dementia virtual communities on Facebook? These groups provide a great way to connect with other caregivers who truly understand what you’re going through. In addition to camaraderie and support, they provide a jumping off point for finding tons of other resources. A few of my favorites FB communities include:
If you’re looking for a way to take action and become an advocate, I suggest checking out 
Another powerful way to make an impact is to join the 
I probably composed a 2,000-word post in my head earlier this evening as I drove home in tears – and now I’m having a hard time putting together a sentence! My eyes are burning, I’m exhausted, nauseous, and I wish I could run off to a deserted island until February.
Over the past couple of months, I’ve tried so hard not to get weighed down with sad memories and heartache. Now that November is here I think it’s catching up with me. Each day, I find my thoughts wandering to last year at this time, and to be honest, I’m not sure that continuing to push the thoughts away is the right thing to do.
For my entire adult life, she was always the first person I’d call when something great happened – or when something was wrong. Whatever it was, she was there – to celebrate, to console, or to provide words of wisdom. And then as I approached my late 30’s, she wasn’t there anymore, at least not in that sense – she ceased to be my rock and I gradually became hers… or tried my best to be.
The Long and Winding Road... 